Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.

Autor:	Scheer ER; Department of Systems and Information Engineering, University of Virginia, Charlottesville, VA 22904, United States., Werner NE; Department of Health and Wellness Design, Indiana University School of Public Health-Bloomington, Bloomington, IN 47405, United States., Coller RJ; Department of Pediatrics, University of Wisconsin-Madison, Madison, WI 53792, United States., Nacht CL; School of Public Health, San Diego State University, San Diego, CA 92182, United States.; Herbert Wertheim School of Public Health and Human Longevity Science, University of California San Diego, San Diego, CA 92093, United States., Petty L; Department of Systems and Information Engineering, University of Virginia, Charlottesville, VA 22904, United States., Tang M; Department of Industrial and Systems Engineering, University of Wisconsin-Madison, Madison, WI 53706, United States., Ehlenbach M; Department of Pediatrics, University of Wisconsin-Madison, Madison, WI 53792, United States., Kelly MM; Department of Pediatrics, University of Wisconsin-Madison, Madison, WI 53792, United States., Finesilver S; Department of Pediatrics, University of Wisconsin-Madison, Madison, WI 53792, United States., Warner G; Department of Pediatrics, University of Wisconsin-Madison, Madison, WI 53792, United States., Katz B; Family Voices of Wisconsin, Madison, WI 53705, United States., Keim-Malpass J; Department of Pediatrics, University of Virginia, Charlottesville, VA 22903, United States., Lunsford CD; Department of Orthopedics, Duke University, Durham, NC 27710, United States.; Department of Pediatrics, Duke University, Durham, NC 27707, United States., Letzkus L; Department of Pediatrics, University of Virginia, Charlottesville, VA 22903, United States., Desai SS; Department of Public Health Sciences, University of Virginia, Charlottesville, VA 22903, United States., Valdez RS; Department of Systems and Information Engineering, University of Virginia, Charlottesville, VA 22904, United States.; Department of Public Health Sciences, University of Virginia, Charlottesville, VA 22903, United States.
Jazyk:	angličtina
Zdroj:	Journal of the American Medical Informatics Association : JAMIA [J Am Med Inform Assoc] 2024 Apr 19; Vol. 31 (5), pp. 1151-1162.
DOI:	10.1093/jamia/ocae026
Abstrakt:	Objective: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. Materials and Methods: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. Results: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. Discussion: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. Conclusion: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications. (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)
Databáze:	MEDLINE
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